weekly freakout- need some perspective please!!!

[Deirdre]

OK. I have "mild" IC. I can go about my daily life most days fine but I always have this burning/urgency feeling and it is driving me literally crazy some days.
Some days I am mentally fine- saying to myself, "Give it more time- keep trying to find solutions" Other days like today I just can't stand the feeling- plus today is especially bad and I have no idea why. I am looking to my future and thinking- "I can't live like this" I have 3 young kids and I try so hard to spare them my emotional troubles with this but sometimes I just can't. I have been crying for an hour.

Now can anyone give me some perspective about my case? Please don't say-"Talk to your doctor" I would love some actual IC patient input.

I only started having symptoms like a UTI in November. They were gone for most of Dec and then came back full force on Jan16 and haven't left. I started Cystoprotek on Feb 14 and I stick to the IC diet. I am also using Estrogen cream for vaginal atrophy/low estrogen that may be causing or exacerbating symptoms. Some days are much better and I only have a vague soreness in the bladder. Some days are full on burning, soreness and constant urge to urinate. That is the worst symptom. last week I had a suspect food and had a serious reaction that night.

I feel like I need to escape this nightmare and yet I can't. I am so scared. I feel like I will never have sex with my husband or go a day without obsessing over this. I thank God that I don't have the excruciating pain that some of you do but still I am feeling like "Why me???"

[Linda May]

you may have to try a different treatment plan like dmso, rescue treatments. this helps me alot, keep us posted after you talk to your uro about this.

[ICNDonna]

One thing you could do is to keep a diary for a few weeks, listing everything that goes in your mouth, activities, pain levels --- be sure to list time of day. You may be able to track something that's triggering your flares.

Warm hugs,
Donna

[Deirdre]

I think I need some mental tools to deal with this when it gets bad. Like- "Give it 2 weeks and then re-evaluate" Anyone have any ideas about how I can mentally get through a bad day? Keep in mind I am taking care of a baby and 2 kids. On Saturday, it was a beautiful day and i was in a positive mood despite having to pee constantly. The pain- (if you call it that- more sensation) itself wasn't horrible so I just out loud said to myself," It isn't that bad- you will get better." But today- I am just hopeless. Hopeless. My son was talking about the summer and i just burst into tears. The thought of feeling like this in the summer and trying to be a happy mom.....so sad. I look at my sweet baby and think,"She deserves better"

I was keeping a diary and need to do that again. I actually need to just buy a datebook with a page per day.

[Crystal30]

I am new to this as well and you are not alone on that feeling of sadness in dealing with the chronic pain. However, remember there is hope in the various treatments you just have to stick to them. 2 things that you may want to try is cut wheat and sugar particularly processed foods. Also stress is a huge trigger for me. Sounds like you have a lot going on so perhaps take some time out for meditation or yoga. It helps you to release tension and also to not freak out and have a break down while you are experiencing a flare up. Good luck and stay positive. I'm on aloe leaf from desert harvest, IC diet strict, and heparin bladder washes.

[Pipkin]

Hi Deirdre,

The most frustrating part of IC for me is that it takes so darn long to figure out how to feel better. I started having bladder problems in July 2010, was diagnosed with IC in Sept 2010, then had a lot of ups and downs as I tried to figure out the IC diet, and it's only been in the last few weeks that I have really started to feel better.

I'll share with you what has been working for me, but since we are all so different (I read one author who described IC as the 'snowflake' syndrome, because no one person is the same as another) I know you will have your own 'trial and error' phase. Just know this - that there is absolutely something out there that can help you. Dr. Lowell Parsons, who is pretty much *THE* IC guy and created rescue instillations (I believe), published a paper in which he says 90% of people with IC can expect to eventually find a treatment that works for them and live a good life, and newly diagnosed people in particular have the best chance.

Things I learned on my IC journey.
* It is not OK to cheat on the IC diet. Ever. Every cheat set my bladder lining back and I had to follow the diet super-strictly for a few weeks to a month just to get back what I lost with one cheat.
* I think Aloe Vera is starting to work for me. I think it works better if I take it with calcium. I've also been taking it for over 3 months and only now am I starting to feel I'm getting better. The key message here is PATIENCE.
* I buffer my urine with calcium, and I feel this helps immensely. My urethral burning is almost always tied to the pH of my urine.
* It's important to set expectations. When I was first diagnosed, I figured I would need at least a year to figure out how to manage it, maybe two. It's going to take time for you to heal too, but it absolutely can happen.

[flowerangela]

miss deirdre-i know how you feel. this is hard,but this too shall pass.i'm looking at it no matter how bad i'm feeling ic is not forever.only the medical community says theres no cure.with god anything is possible.youve got to do the trial and error thing with treatments and see what works best for you.

[Deirdre]

Angela (((HUG)))

Pipkin-Thank you. Yes- patience is so hard for me. I am trying to set longer goals like 3/4 months on Cystoprotek, 3 months on the diet strictly before even trying anything etc. I so appreciate your input- very helpful

Chrystal- I was dairy/gluten/sugar free for months because my nursing baby was having issues. So ironically, IC started while I was doing the elimination diet. I am still relatively sugar free but I have added some dairy and gluten back in because the baby is tolerating things well and I was losing weight. I am trying to stick to the IC diet plus I am suspecting a salicylate intolerance issue so I needed to add some stuff. After I try this for 3 months I am going to experiment again with gluten. AHhhh patience. Yes- i am getting back into yoga and meditation. Thannk you!

In general, I am trying to do whatever I can to help myself. I am thinking of hiring someone to do some things around the house to take some pressure off my husband and I am taking people up on their babysitting offers when possible.

Acceptance that this is my journey right now is hard.

[wagamama]

I think I need some mental tools to deal with this when it gets bad. Like- "Give it 2 weeks and then re-evaluate" Anyone have any ideas about how I can mentally get through a bad day? Keep in mind I am taking care of a baby and 2 kids. On Saturday, it was a beautiful day and i was in a positive mood despite having to pee constantly. The pain- (if you call it that- more sensation) itself wasn't horrible so I just out loud said to myself," It isn't that bad- you will get better." But today- I am just hopeless. Hopeless. My son was talking about the summer and i just burst into tears. The thought of feeling like this in the summer and trying to be a happy mom.....so sad. I look at my sweet baby and think,"She deserves better"

I was keeping a diary and need to do that again. I actually need to just buy a datebook with a page per day.

Honestly, when you are first diagnosed with IC, these feelings are pretty common. It may not help you to feel better to know this, but you're not alone and I think everyone feels depressed when they are diagnosed.

My biggest problem when I was first diagnosed was depression, more than the pain, really. I would drive my son to pre-school and see women jogging along the streets and think, "I can't do that anymore. I may never be able to work out again." And I'd start to cry. Ditto with cancelling the wine club membership and putting my jeans away to wear stretchy sweats. Your self image suffers a bit when you are diagnosed, especially if you're new to it and it came on suddenly.

But you know what? A year later, and I can run again. I can have a small glass of white wine sometimes and not pay for it. And darn if I'm not in my skinny jeans again. Your life right now is probably not the way it will always be. A lot of people improve. You have real reasons to hope. Just keep that in mind sometimes and allow yourself a little cry without feeling guilty.

[passion4life]

I truly understand the feelings of hopelessness and the anxiety of not knowing. My symptoms are better but I have to be hyper focused on the IC diet. I have slipped before and did I pay for it. But as they say in another place I frequent, "Progress not perfection!" I am still trying to implement all the things I "know" into the things I "do." I can see progress and growth.

This forum has been my God-send. I find encouragement, love, and most important of all, acceptance.


For me, I had to seek the help of a counselor. The weight of IC was too much for me alone. I can see progress both physically and mentally.


Hope everything continues to get better. Have the best day you possibly can.

Praying for the cure

[Deirdre]

wagamama- THANK YOU!!! Your post was just what i needed today. I found another person on my Mothering discussion board with IC and I asked her a bunch of questions. Unfortunately her answers were even more distressing to me and it sent me into a depression spiral last night into this morning. I NEED to believe that I will feel better. You don't by any chance live near Philly? I am desperate for someone to talk to to put things in perspective for me and not to tell me that I will just have to find a way to manage.

In my case, I really feel the mental issues are worse than the physical.The fear that this is the new me. Never again will I eat out, not obsess over my bladder, or worst of all I am so afraid that my sex life is over. My husband and I have been together for 21 years (high school!) and all these years,we still have amazing "chemistry." He would never leave me but I am afraid our relationship will never be the same.

I totally feel what you are saying about the moms on the way to preschool! I walk my 1st grader and usually the moms are waiting outside chatting. I have stopped waiting and now I just drop him off and bolt. I kind of hate everybody for feeling normal. Then that bums me out too. having little kids really complicates this too. I HAVE to keep going and keep it together even when I just need to cry. The whole family is suffering.

Anyway- THANK YOU SO MUCH!

[Deirdre]

I truly understand the feelings of hopelessness and the anxiety of not knowing. My symptoms are better but I have to be hyper focused on the IC diet. I have slipped before and did I pay for it. But as they say in another place I frequent, "Progress not perfection!" I am still trying to implement all the things I "know" into the things I "do." I can see progress and growth.

This forum has been my God-send. I find encouragement, love, and most important of all, acceptance.


For me, I had to seek the help of a counselor. The weight of IC was too much for me alone. I can see progress both physically and mentally.


Hope everything continues to get better. Have the best day you possibly can.

Praying for the cure

OH ((((((((((HUG)))))))))))) thank you so much. I am definitely thinking about seeking a counselor. I just don't know what to look for. They have to know something about chronic illness. How did you choose? Thanks for the encouragement. I am so glad you have seen some improvement. 'Progress not Perfection' is so applicable for me. When I have a decent morning and then it gets worse as the days goes on, I forget all about the fact that the morning was ok. Thanks for the reminder!

[passion4life]

Actually, my counselor was chosen by employer's EAP counselor. I was really having a difficult time in October 2010. In addition to having IC, I am also a recovering addict. By God's grace I have been clean/sober for 6.5 years. So I am limited to what I can take for IC. To date, I have refused all narcotics because I do not want to put by recovery in jeopardy.

Therefore, my world was full of despair and a sense that things would not get better.


The counselor I have now is equipped to handle both my illnesses: IC and addiction.

My suggestion would be to find someone who can handle your IC issues and the effect this has on your relationships. I truly believe as we get better mentally other situations often get better as well.

Today my outlook is different. I am learning to live with IC. Some days are better than others but my outlook is gradually becoming more positive.

Going to a counselor was one of my better decisions.

Hang in there and have the best day you possibly can

[mbhbarb]

Hi. I'm in an IC remission that is now more than 3 years old. When I was first diagnosed, I thought my life as I knew it was over. I was so impaired by the pain and constant need for a bathroom in close proximity. My mantra then and now is "It's only temporary." In fact, I have a t-short with that printed on it. It's a big loose t-shirt I bought for wearing on days when I had a swollen belly and lots of pain. Hope, in my opinion, is essential for a sense of well being when trying to overcome an illness or other difficulty.

Another thing that helped me, and it will be more of a challenge for you since you have children at home, was to take little vignettes of peaceful solitude throughout the day. They could be as short as 5 minutes. During that time I'd put a hot water bottle on my belly, maybe listen to some soothing music, use aromatic oils for aromatherapy, read a much-loved book; I just exited the "must do" chores for a short time to focus on loving to have a body. (Not always an easy thing to do when it hurts so much.) Sometimes just changing the focus of my attention to something pleasant (like warmth or a nice fragrance) helped mitigate my pain and gave me something to look forward to.

I hope you find the answer you seek and that you will keep improving.

barb

[MamaZ]

wagamama- THANK YOU!!! Your post was just what i needed today. I found another person on my Mothering discussion board with IC and I asked her a bunch of questions. Unfortunately her answers were even more distressing to me and it sent me into a depression spiral last night into this morning. I NEED to believe that I will feel better. You don't by any chance live near Philly? I am desperate for someone to talk to to put things in perspective for me and not to tell me that I will just have to find a way to manage.

In my case, I really feel the mental issues are worse than the physical.The fear that this is the new me. Never again will I eat out, not obsess over my bladder, or worst of all I am so afraid that my sex life is over. My husband and I have been together for 21 years (high school!) and all these years,we still have amazing "chemistry." He would never leave me but I am afraid our relationship will never be the same.

I totally feel what you are saying about the moms on the way to preschool! I walk my 1st grader and usually the moms are waiting outside chatting. I have stopped waiting and now I just drop him off and bolt. I kind of hate everybody for feeling normal. Then that bums me out too. having little kids really complicates this too. I HAVE to keep going and keep it together even when I just need to cry. The whole family is suffering.

Anyway- THANK YOU SO MUCH!

I live near Philly!! Are you talking about Mothering Magazine forums or another one?
I have two little ones and am here to talk. I totally know what you are going through. It SUCKS!